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Advancing MS: Are You Sabotaging Your Treatment?

Even if you feel that your symptoms are under control or if you’re experiencing long periods of time between relapses, learn why compliancy and failing to stick to your treatment plan can hasten the progression of MS.

Between
relapses, patients with RRMS (Relapsing Remitting MS) might not have any
apparent symptoms or might even improve. They often “feel” better and opt to go
off their medications. This can worsen their long-term prognosis.

MS is an
autoimmune disorder, where the body’s immune system attacks the myelin in the
brain. Myelin, which forms a protective shield and insulates the lining of
nerve fibers, is crucial to proper functioning of the nervous system. MS drugs
are immuno-suppressive-- they work by suppressing, or altering, the activity of
the body's immune system, thereby protecting myelin and preventing further
destruction of the myelin sheath. Once you stop taking them, you allow your
immune system to return to full strength and attack your myelin again. You may
not have any sign that this is happening until it’s too late, and you have a
relapse.

What happens when you skip your meds

Your medications do not cure MS, but they do reduce
the frequency and severity of attacks and the development of new brain lesions.
In addition, some medications may slow down the progression of MS, reducing
future disability.

“Clinical
studies show that patients who had gaps in therapy lasting 90 days or more were
nearly twice as likely to experience a severe relapse,” says Dr. Gabriel Pardo,
Director of the Oklahoma Medical Research Foundation Multiple Sclerosis Center
of Excellence. “It’s important for patients to find a routine that works for
them and that they can adhere to, Patients might feel well between relapses but
in fact the disease is progressing and they might not recover from their next
relapse. The disease is still progressing although the patient doesn’t know it.
The brain has a great ability to repair itself and find new pathways. But if
you create a roadblock the brain can get around it some of the time, but not
all of the time.”

Improve your doctor-patient relationship

Patients
may sabotage treatment because they don’t have good communication with their
doctor. “A primary issue for MS patients is to assure that there is open
communication between patient and doctor,” asserts Dr. Karen Blitz-Shabbir,
director of the North Shore /LIJ MS Care Center. “The issue is that people want
to be good patients and please the doctor and may not bring up problems that
need to be explored more directly. For instance a patient may be non-compliant
because she has injection fatigue or skin issues from repeated injections, and
switching to oral medications may be a good option. Doctors have to ask the
right questions and examine patient functioning, not just do routine tests or
measure muscle strength.”

Patients
tend not to sabotage treatment unless they have a bad relationship with their
doctor, says Dr. Saud Sadiq, research director of the Tisch MS Center in New
York City. “You have to convince them why they should be on treatment, but not
all patients do. No one wants to sabotage themselves.”

Your
doctor should ask you what your goals are, says Dr. Sadiq. Then you can make a
treatment plan you can both agree to with well-defined goals. “When patients
complain or fail to follow a treatment plan, it’s usually because those goals
are murky and they don’t understand what’s happening. They go home not sure how
the latest prescribed medication will work, there’s no follow up. If you come
to me with pain, I’ll ask you where it is on the pain scale..If it’s an 8, then
the goal will be to get it to a 2. I’ll try a few medical approaches and tell
you to call me back in two weeks. If it’s not better I’ll increase the dose or
switch meds.”

Seek treatment for depression

Depression
is far more common in MS than in patients with other diseases, even cancer. “We
don’t know why,” says Dr. Pardo. “Approximately 50 percent of MS patients will
get depressed at one time or another.”

Depressed
people, whether or not they have a chronic illness, tend to sabotage
themselves. They lack self-esteem, feel too unworthy to take good care of
themselves, don’t think they matter to anyone else, and may fail to seek the
help they need. They tend to have cognitive distortions such as “why bother,
I’m just going to get worse anyway,” or “life is not worth living, so why get
treatment?” MS may not be curable, but it certainly is treatable.

Don’t be ashamed
or embarrassed to talk to your doctor about your mood issues. Antidepressants such as Prozac and other
SSRIs can and do help MS patients. Traditional psychotherapy or cognitive
behavioral therapy can also be very helpful.

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